Cystic Fibrosis Foundation Compass can be a partner in managing your disease and everyday challenges.

Transplant Support

Lung transplantation is expensive, even for people with health insurance, so having a financial plan is critical. It is also a milestone in a person's life. With any milestone, many questions, concerns, and issues may arise. Compass can be your partner through the process by helping you locate a transplant center, understand transplant costs, plan for housing and transportation during your transplant, find financial assistance for transplant medications, and plan for caregiver education and support. 

A transplant does not mean a person's journey with CF is over. Compass is here for those post-transplant in helping to tackle other challenges that may be faced after surgery and beyond.

Living Expenses

Life comes with many expenses related and unrelated to cystic fibrosis. Whether it's utility payments, home repair, or having enough food on the table, there may be resources that help cover certain costs. Compass can help you identify those resources locally while also finding ways to lower other costs associated with your care to free up funds for these everyday costs.

Monthly Bills

If you are behind on your bills for living expenses, Compass may be able to point you toward resources to help. Case managers can help you find out exactly how much you owe and work with you to make a plan for dealing with financial issues related to living expenses. Along with contacting the utility company, Compass can also find grants that can help cover costs to help you with the issue as quickly as possible.

Food

If you have trouble getting enough food or if affording groceries is a challenge, you may be able to get help. Communities across the country have resources and programs that have discounts on groceries, food boxes, and food delivery. You may also want to talk with your CF care center social worker about what resources might be available, such as your local Feeding America food bank, that can help supplement your diet.

Home Improvement

If you need help with a home modification or home repair, Compass case managers can spend the time to look for local or state resources that can provide financial assistance.

Taxes

Many states have programs that offer free help to people under a certain income, persons with disabilities, and limited-English-speaking taxpayers who need assistance preparing their tax returns.

Transportation and Travel

Getting to and from your CF care center is difficult if you have trouble with transportation, such as needing gas, a reliable vehicle, or money for parking fees. You can see if your insurance plan can help by contacting the plan’s member services to see if transportation is a benefit. In most cases you will need to call and schedule your trip at least 48 hours in advance, and there may be a distance limit. If transportation is not available through your insurance plan, there may be local and county programs that can provide transportation services or vouchers for public transportation. In rarer instances, there may be other local organizations that can assist with gas cards or car repairs.

Funeral Assistance

Losing a loved one comes with emotional and financial tolls. There may be some financial help through Social Security, Community Action, local private foundations, or even religious organizations and houses of worship. While financial programs and local resources may be limited, Compass can do the research for you during this difficult time so you can focus on your loss and not the financial burden.

Emotional Wellness

People with CF as well as their family members often need help coping with the disease and its impact. Most insurance plans offer mental and behavioral health coverage, with in-network health care providers that specialize in mental health services. There may also be specialized support groups, wellness programs, and other resources available in your local community. Compass case managers can help research your mental health benefits under your current plan as well as search for available programs and resources in your area.

Genetic Testing

Genetic (or carrier) testing plays a key role in the diagnosis of cystic fibrosis and can help guide treatment decisions, but insurance coverage varies, so it can be expensive.

Many insurance plans will cover the cost of a genetic test. You can call your insurance company to see if this is a covered benefit and to learn of any copays or coinsurance due for the test. If your insurance does not cover the cost of a genetic test, a Compass case manager can help you learn more about low-cost national carrier testing resources.

The Mutation Analysis Program (MAP) provides free genetic testing to people with a cystic fibrosis diagnosis to help identify their CF gene mutations. To learn more about the MAP program please contact your accredited cystic fibrosis care center.

Whatever life issue you are facing, Compass case managers are here to listen and help you navigate through it. If there is an issue that we cannot tackle, we can help identify and connect you with organizations that may be able to. Contact Compass at 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email us at compass@cff.org. You don't have to do it alone.